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What Now?

Hi Well I had an appointment with the neuro last night (private appointment, courtesy of my parents. Further appointments willl be NHS) but I don’t feel that he told me anything that I don’t already know :? I apologised to my Mum as felt it was a total waste of time and money and should have just waited like everybody else. I’m amazed that he actually diagnosed me with RRMS due to history and a short examination but didn’t even see my MRI results as “the disc would not not load”!!! He did say he’d keep trying. Can he do this? Is this normal? Should I be seeking further clarification? Apparently he is going to refer me to an MS Nurse and advised me to keep my NHS appoint for the end of Nov at my local hospital, but spoke about transferring me after that to the 'specialist clinic/ team?? and I imagine he’ll write a report for my GP??? Sorry but so stressed, frustrated and verging on whining now :frowning:

Hi Kirstie, First off, I don’t think you need to apologise to your mum, or anyone, for going private. That is your right! I went private, for my investigation and diagnosis, since work had already paid for private health cover for me. So it would have been perverse of me to reject it and join the queue. Also I would have been making the queue longer for people who don’t have the option, so I don’t feel bad about it at all. I’m a bit confused (as you seem to be yourself) about the rest of your story, though. On the one hand, you say you didn’t learn anything new, but on the other, that he diagnosed you - which surely is a huge step forward? It seems rather unlikely that he would have referred you to an MS nurse if you didn’t have MS. I gather this is sometimes possible where someone only has a “probable” diagnosis - but still not very common. So he evidently believes you do have MS. No, it’s not usually possible to diagnose on symptoms and physical examination alone, so I’m guessing he must have had access to additional evidence. Who did your MRI, and are you sure he didn’t already have the results on system, so didn’t need the disk? Or maybe he’d read a written report of it, which described changes consistent with MS? He must have had something, I’m pretty sure. If you are at all in doubt about what the upshot was, there are a couple of routes open to you. You could phone his secretary, and say you are unclear about the current position, and would like clarification. Or, you could approach your GP, and see what feedback they have received, and whether they can interpret for you. Certainly, if he has gone so far as to diagnose, your GP should have received a letter advising of the findings. I got copies of two letters to my GP. The first, after initial investigations, was a diagnosis of “probable RRMS”. The second, after a few months, and evidence of further disease activity, was a confirmed diagnosis. In both cases, it was bold, underlined, right at the top, so it was clear what my diagnostic status was, even if I had no idea what the rest meant. I think you need to quiz your doc about what has been received. Hope this helps, Tina

I’m with Tina - doesn’t sound like a waste of money at all!!! I would also agree that he probably had a copy of the MRI report - I doubt very much that he would have diagnosed you by you just telling him that there were lesions. Great news that he’s going to get you transferred to the MS team too :smiley: All in, an excellent way to spend a couple of hundred quid!!! Karen x

Kirstie34 wrote:

Hi Well I had an appointment with the neuro last night (private appointment, courtesy of my parents. Further appointments willl be NHS) but I don’t feel that he told me anything that I don’t already know :? I apologised to my Mum as felt it was a total waste of time and money and should have just waited like everybody else. I’m amazed that he actually diagnosed me with RRMS due to history and a short examination but didn’t even see my MRI results as “the disc would not not load”!!! He did say he’d keep trying. Can he do this? Is this normal? Should I be seeking further clarification? Apparently he is going to refer me to an MS Nurse and advised me to keep my NHS appoint for the end of Nov at my local hospital, but spoke about transferring me after that to the 'specialist clinic/ team?? and I imagine he’ll write a report for my GP??? Sorry but so stressed, frustrated and verging on whining now :frowning:

Confused… Why are you unhappy if you have a diagnosis?

Mturner: It’s not that I’m unhappy as such, just very frustrated and confused that if he did have access to a report that led to dx he didn’t share it with me. And irritated with myself that I didn’t ask :x Tina: even more irritated that I called his secretary and she wouldn’t give me a straight forward answer as to whether there is report, but just told me that he would be able to access the scan on Monday :?: But i’ve followed you’re advice and have a GP appointment later today to see a copy of the referral made to Neuro, which I assume is based on a report that the GP would have received as a result of the MRI phew :? I appreciate you all taking the time to respond to my whining and the opporttunity to share is a weight off ((((HUGS)))) xx